Olivia’s NICU Story: You Don’t Pick Your Child’s Path, You Only Pick How You Respond to It

My wife, Leslie, had a very typical pregnancy through the first 36 weeks. We were expecting our first child, a daughter to be named Olivia, and dreaming of all the things first-time parents dream of and worrying about all of the things first-time parents worry about. Then our world was turned upside down.

During a scheduled ultra-sound, our obstetrician noticed Olivia had grown very little since her last check-up. We were referred to a specialist, who identified a few signs of “something genetic”. For two very, very Type-A parents, this level of ambiguity was intolerable. We searched the internet endlessly, only to discover that the genetic signs that had been identified meant Olivia could have any of thousands of conditions or disorders. And to make it worse, each one of these conditions or disorders could have outcomes that ranged from “typical” children to children that may or may not survive birth.

We spent the next month rationalizing, consoling, prognosticating, divining, praying and whatever else we could do to try to explain the uncertainty that we were facing. My most likely theory – she’d spend a few days in the level 2 NICU and we’d go home and watch some baseball on TV, no big deal.

Then the big day came, Olivia graced us with her presence on July 20, 2009. She was 3 lbs., 11 oz. and we loved her to death the moment we saw her. But, her fight was just beginning.

Olivia was born with meconium in her throat and wasn’t breathing. Thankfully, our early discovery of “something genetic” allowed our obstetrician to request a neonatology team from Texas Children’s to be present for Olivia’s birth. A few seconds after her birth, Olivia was out of the room, had her throat suctioned and I was staring at my beautiful little girl, who was showing her first signs of tenacity and stubbornness by giving the nurses a run for their money as they tried to clean her, measure her and swaddle her.

Then, before we knew it, Olivia was whisked away to the NICU, which at that time was a complete unknown to us. Leslie was still recovering from her C-section, so I wandered through St. Luke’s over the bridge to Texas Children’s Hospital, eventually finding myself at the NICU. Olivia had been admitted to Texas Children’s A-Pod, part of the Level 3 NICU.

Describing the Level 3 NICU to someone who has never been in Texas Children’s seems impossible. I don’t know what I was expecting, but it wasn’t what I saw. I was instantly overwhelmed by what seemed liked endless cords, monitors and beeps. Olivia seemed to have almost 10 people around her; all doing things that looked terribly important. I, on the other hand, was completely lost. After about 15 minutes, I got the courage to ask one of the nurses or doctors what was going on…at which point, they asked me, “Who are you?” “Olivia’s dad”, I replied, assuming they knew that. The rest of my time during that first NICU visit is still a complete blur, but I did my best to be a proud father and left with as much information as possible, knowing that Leslie, my family and friends would have a lot of questions.

The next few days were the hardest of my life. No one could tell Leslie and I exactly what to expect with Olivia until her blood was drawn and sent off for genetic testing. There were two stages, the initial screening to rule out trisomy 13, trisomy 18, and Down ’s syndrome and the full genetic microarray.

We were told getting the blood work back could take weeks for the first round and up to a month for the second round. Being the impatient, Type-A parent that I am, I asked the neonatologist on duty that day to give us his best guess on what Olivia could expect – the news hit me like a wrecking ball, he suspected trisomy 18, which had an average life span of a few weeks. That was the darkest moment of my life, I had just met my little girl, and how could she be taken away so quickly? I honestly can’t tell you much about the next few days, it was simply a lot of worrying and a helpless, sick feeling.

Four days later, we got the news – it wasn’t a trisomy. I do remember that moment; I tackled my brother, Peter, and cried, and sobbed, and sobbed, and sobbed. A week or so later, we found out Olivia had an extremely rare genetic deletion, called a 13q deletion. While that prognosis was uncertain, we finally had a diagnosis.

Anyone that has been in the NICU with a child can describe the ups and downs of the NICU. Olivia was in a warmer, then on CPAP (continuous positive airway pressure), then off CPAP, then in her “incubator”, then on a NG (nasogastric) tube. She had a surgery to place a G-tube in her belly to eat. She had so many tests and saw so many doctors that it all ran together. I can’t tell you how many times I washed my hands or used hand sanitizer or walked to the food court or walked to the milk bank or called the nurses on night duty to check on Olivia. It was like Groundhog Day for 57 days. Wake up, go to the NICU, sit with Olivia all day, go home, call the night nurse, sleep, repeat. Once in a while we found time to eat.

The one constant through those 57 days was Olivia. She was a rock. She loved being held. She never fussed. She ALWAYS fought and ALWAYS kept making progress. She persevered.

Before we brought Olivia home, I had already realized how special Texas Children’s Hospital was. I was extremely thankful to have had the resources Texas Children’s was able to bring to bear for Olivia. On top of that, Olivia had completely changed me. Never in my life had I seen someone fight as hard as Olivia fought. Despite all of the adversity she faced, she came home.

Our life did not instantly become “normal” when we came home with her. Olivia was still on nasal oxygen and tube fed. She continued to aspirate oral feeds and had severe reflux, among other issues. But Olivia did what she always did, fought hard. Eventually she was taken off oxygen and overcame her aspiration.

Around that time, I started working out at a local CrossFit gym, Bayou City Crossfit. It was my escape; my place to clear my mind.

I quickly became close friends with the owner, Vic Zachary, who offered to host a fundraiser to honor Olivia’s fight. Just like that, Battle Buddy 57 was born. The event was modest, 100 people working out to honor Olivia by completing a workout named after her. “Olivia” is 8 exercises, one per week of Olivia’s NICU stay. Teams of 2 complete 57 reps of each exercise, one per day of Olivia’s NICU stay.

Four years later, we’ve hosted 5 events and raised over $60,000 for the “Olivia Grace Stevens Endowed Fund in Neonatology”. Our last event had over 450 athletes and another 400-500 spectators (see video, here). We’re honored to host this event every year. The event brings awareness to Olivia’s story and the NICU at Texas Children’s Hospital. Our family hopes that what we contribute to the NICU at Texas Children’s will help more families experience what we did – we brought our daughter home.

I’ve read y’alls story at least 5 times the past 7 months and I cry every time. Without your knowing it this story has helped my husband and I tremendously.
Thank you for taking time to share, and our prayers are ever with precious Olivia.
Jordan (Special Moms Group)

Great article Chad. Love the Stevens family. Olivia is blessed with a great Dad, super Mom.and precious little brother. Chad and Leslie….you are an inspiration!I am so glad our Sam and.Olivia were friends. Leslie, I am blessed to be your friend.

Dear Stevens family, your story takes me back to Jan 13, 1994, that’s when I was whiskee to the or for an emergency C-Section, the Dr new something was up, but i was in the dark all I wanted was to see my baby, well when he arrived he was not breathing, he was gray, and flopy they intibatee imediatley,and rushed to the NICU where we stayed for 65 dys went through 3 infctions, daily blood work, finallt endedup with pick line for easier acces. I stayed from 7am to 3pm then lwft to pick up my other son who in Kindergarten, fixed dinner for him and my husband . He got hme arond 5:30, we would kiss and hug,and I was out the door again and would stay till midnight sometimes. the noices in the NICU were o l0ud that first week, and the beeps,,,beeps,beeps that were pretty much ignored by the nurses, ( they new which sounds were impotant) and coming in to see my son one day ,and beside his bed wqs a big curtain on wheels completley covering his bed, I didn’t know what going on,so I asked Jeremy’s charge nurse which I happened to know, she said” he didn’t make it he died this morning, they have called his mom, she said she just couodn’t come”” I almost passed out, kmowing wht was behind that curtain, and to also know he was all alone, gosh it makes me cry now. Any way I guess I just closed out all that stuff and just focused on Jeremy who was still on the vent, nd had a g tube pulse ox,heart monitor,that wat enough for me to keep up with, the interns ( this is a teaching school) would come by often and say, hoe how cute, how he doing today, and I would tell them, and then they would ask what’s his diagnosis, I wouod tell then CHARGE SYNDROME, and they were like,,ummm hat is that? I just smiled and said maybe they needed to look it up, that would explain it better than I could. Really at this point I aactually knew more about it than most of the DR. they had never had A CHARGE kid before, then I found out there was a little girl around the corner from us waiting on her diagnosis, I talked to the Mom, we became pretty good friends, because test resuots came in and she had CHARGE too, That really freaked then out in the NICU!!!!!, CHARGE happens 1 in 60,000 births, Jeremy had it rough for the first 3-4 years he even started first grade with his feed pump,suxtion machine. but his One on One learned how to use it all, and the school was 5 mles from my house if she needed me, after he started school, he BLOSSEMED!!!!! he had already taught himself how to sight read, and he has a photographic memory, so he loved school. he was like a sponge, and still is, he started our local Technical school last week, he is taking English 2 and Physcology, I
wanted you guys to know it will be a tough, long, scarey ride for a while, but keep the faith and things will get “normal” families like us have a diffrent “NORMAL” but it does get better.Hannah is a fighter, and that wil keep her going and improving more every day, God Bless you all
Sincerely
Kelly Isley from Winston Salem,NC

I was a NICU parent at TCH in 2002 with my son Sebastion. Its not easy to explain ones thoughts or moments in that room. Im glad she went home as many dont. My son came home and was a fighter like Olivia. We where told with his brain injury at birth he would never walk talk. He beat the odds and he does. Its true positive response to a negative outcome presented to you is always better. Hope Olivia is doing great…Go Mom and Dad

Thank you for sharing Olivia’s journey . . . and for sharing this precious time that you and Leslie have experienced together, Chad. Your writing is well done, and touching many lives, and I hope you continue! So glad that your parents are nearby now to help out AND to share in the love and journey of your precious family. Please know that you, Leslie, Olivia, Ben, Mary and Emery are in my daily prayers.